Wednesday, January 28, 2009

This picture was taken Monday - during Eli's two hour nap on the floor. (The boppy is on his back, to simulate the arm that was laying across him when he fell asleep.) Eli and I have been sick this week...and two hour naps have been the norm. For both of us :)

I did a scrapbook page the other night.....all pictures of Eli sleeping. I got 18 pictures on a two page LO!
Turns out I LOVE taking pictures of Eli sleeping.....the 18 photos on that page only made a dent in my stack of "Eli Asleep" pictures! :)

Thursday, January 22, 2009

Well, the colon cleanse worked...for now. Eli became a poopin' machine on Tuesday and Wednesday! Woo Hoo! Prunes are a magical thing! Now we just gotta figure out what his maintenance routine is going to be. It's a fine balance between tummy aches due to "back-up" versus "too much fiber & fruit"!

Today, Eli went back to pre-school after nearly two months off. When all his problems started last November I began wondering if he kept getting sick from "pre-school germs", so I decided to take the month of December off. By the time Christmas break came around we realized it was more than colds or flu. Then, the first day back for him in January - I totally forgot! Oops! The next week he had his Seattle doctor appointments......so finally today - we made back to pre-school!

He did great in OT. Lots of stretches and massage from the COTA.

We go in and visit his classroom after OT. There is a new boy in his class. It's up to 6 kids now, with one teacher and two aides.

Four mobile kids and two not. Makes me even more uncomfortable with the thought of laying him on the floor. It seems that three of the four mobile kids are Autistic...and so unpredictable. If they fell on him or dropped a toy on him, I would just die! So, for now, he stays in his stroller, or in my lap....thankyouverymuch!!!

Teacher Rene'e had him reach into a tray of these little plastic pieces (they are tiny pieces of plastic used to meltdown and make plastic grocery bags, I guess)....Eli grabbed a handful, and was doing well....until the lone girl in the class decided to come up and reach in and throw a handful on the floor! Playtime was over....the beads were now infected with germs. LOL!

Then, the new boy decided to come and EAT some of the miniscule little things off the floor. My mother's instict kicked in and I said, "No, no, Baby. No, no."

Oh, well! I'd rather have him throw a fit, than eat [and or choke on] plastic!

One minute later, he's off playing somewhere else. Life went on. Imagine that!?

Teacher says, "It's his second day in class, we are trying to get to know him and his ways." Um, yeah. Could someone tell me WHY it's not mandatory for a parent to attend the class with the child the first day or two, to tell the Teachers what the child's behaviors and sounds mean? They are non-verbal. They need an interpreter in new situations!

Sorry. I just don't get it.

Now, can someone get some dry lima beans for this class, please? Sheesh!

Monday, January 19, 2009

I did not vote for him.
I am against abortion.
I am against national health care.
I am against higher taxes.
I support the military.
I believe in Jesus.

HOWEVER!
I can appreciate this monumental moment in American history! Having a black man as President of the United States of America is long overdue. I wish Colin Powell would have run for president....I totally would have voted for him! I have always had a heart for the plight of blacks in american history.

I remember watching Roots as a child and crying so hard. Seing how they treated the slaves was horrible.

I just couldn't understand why anyone could be so mean to another human being....just because of their skin.
I judge by actions....not skin color.

On Inauguration day I will probably shed a few tears as I watch the events on TV. Tears of pride because America has taken such a huge step forward. Tears of sadness for the [what I believe are] scary things to come for our nation.

I keep my faith in God.
I pray hard that my son will always be taken care of. I am thankful for our home and property.
I am thankful that we can grow our own food and raise animals if we need to. I pray hard that we personally can make it through this recession.

Thursday, January 15, 2009

I try to get Eli a Giraffe everytime we go to Seattle Childrens Hospital. Here is today's new friend:

Well....Eli's so full of poop his eyes are brown. Sorry - just a silly thing my Momma used to say.....and I couldn't resist :)

Today, after a visit with Dr. Wahbeh, the GI Doctor at Seattle Children's Hospital....it was decided that Eli needs a colon cleanse. Nice.

Cerebral Palsy wreaks havoc on your muscles and their movement. We knew that. Turns out one of the muscles it can affect is the ol' Sphincter muscle! Plus, he's just not fully getting rid of his "junk" and he needs a little help.

So, we begin a regimen of Milk of Magnesia, Miralax, and Suppositories. I'll be sure to keep ya'll posted about that! I'm sure you can't wait to know more about Eli's bowel movements! Let's just hope it solves the problems we are wanting it to solve: to calm him down, take away his discomfort during feeds, help him be in a better mood during the day, and to sleep through the night so he can get his whole night feed.

Let's hope we are finally on the path to wellness for Eli!

________________________
After a beautiful sunny day in Seattle, with the temp at the top of Snoqualmie Pass being 51 degrees....we come home to a socked-in valley....frozen fog....30 degrees...and this...

Wednesday, January 14, 2009

Oh, if Eli could only experience this kind of peace when he's awake, too.

It's been another rough week for our little guy! Fourth time in the last two an a half months.
We are off to Seattle tomorrow to see the GI doctor and a Nutritionist. Please pray that we are on a path to SOME ANSWERS! It's very hard to watch your precious child be in such pain and he can't tell you where it hurts!

Thursday, January 8, 2009

She had a lot of medical issues over the years...I shudder to think how much money we spent...but if you knew her...you would have loved her enough to do it all, too!

She showed up at our house in September 2003. Just as our rescued kittens Peanut and Emmett were ready to come out of the rescue room....uh...I mean bathroom!

She was the best surrogate Momma to them!

She immediately took them under her care, giving them baths and loving on them.

I'm gonna miss her so much.

She had been acting lethargic the last few days, and Wednesday afternoon we decided we'd take her to the vet on Thursday. By evening, she was in the box we have on a table by the front door...struggling for each breath. We called the vet, and he met us afterhours. He thought she was severely anemic. He put her on oxygen, which calmed her breathing a little, and they drew blood. Then they put her in an incubator to keep her warm and on oxygen. He said he'd do x-rays next. I decided to go home and wait for him to call with the results. His call 20 minutes later said she had a massive tumor pushing the air out of her lungs, and filling her chest with blood. I said, "I'll be right there...don't put her down til I get there."

Tuesday, January 6, 2009

My childhood was less than stellar. During the hardest years of it (4th - 6th grade), my BFF was Kaoma. We lived at the same apartment complex, and her homelife was a little crazy, too...and we bonded in a way only kids going through it all can. I thank God for her, and my stepsister Mary. I wouldn't have made it through it without them.

Some of my greatest memories with her?

Mary braiding Kaoma and my hair into tons of small braids. We loved it! We wore them for days, swimming in them and everything. I loved having my hair all wavy when we took them out....and Kaoma would wash hers right away....she hated the waves. Plus, she used to brush her hair several times a day...she had beautiful think shiny hair.....and she took good care of it!

Playing house with the little neighbor girls. We'd fight over who would get the littlest one as our "baby". We loved playing with her hair.

Playing dolls. Kaoma had a special doll with beautiful hair....and we just loved to play with her. Thanks for sharing her with me! Do you still have her?

Writing in our journal. We shared one. We each wrote on one side. We'd each take turns hiding in her closet writing our deepest thoughts. (Going rollerskating, loving Mrs. Bailey our 4th grade teacher, and our crush on Max.) Oh, yeah. Good times!

Sledding down the hill behind our apartments. Playing down by the river. Sneaking over the fence into the pasture nearby, to have some quiet time under a tree.

Floating the river! And crashing hard on the rocks! Ouch!

Bonnie, Kaoma's mom, playing her guitar at night and singing us to sleep.

Ah, yes. Indeed, there were some very good times, during those dark days of my homelife. For some reason I just can't let go of it all. Keeping the good memories alive is therapeutic. Dwelling on the ugly is not.

The above picture was taken at our 10 year class reunion. (It's hard to believe our 20th is next year!)
I am NOT that old, dang it!

Thanks to a connection on Facebook I was able to get back in touch with her. They say every woman needs five girlfriends. One being from their childhood. I am blessed to still be in contact with three of my childhood friends!

Good to find you again, sisterfriend! I'm glad life is well for you in California!
Love, Aim

Sunday, January 4, 2009

I found this wonderful story on a blog of another mom with a special needs kiddo. I feel like the writer of this story took all the thoughts out of MY head and wrote them down for me! Wonderful!Thanks for taking the time to read it....Amy

"It Takes Both The Sun And The Rain To Make A Rainbow"

_________________________________________Thoughts of a Mom - By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist' s offices and NICU units, in obstetrician' s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

(Each night - this reminds me how I got through another day)

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

(Happy, Happy, Joy, Joy)

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

We have spent the last two months trying to figure out what might be wrong with Eli. We've had some very bad days...and even worse nights! He's not sleeping through the night...which means he doesn't get his full night feed. He gets very irritable in his Bronco, making day feeds hard. We can't get all his calories in him. Sometimes when on his tummy - which is how he sleeps all night - he pulls his knees up like it's painful. His mood is sometimes very fussy - which isn't normal for him - but can be common in CP kids. He's gassy. His BM's aren't normal because his food intake varies from day to day. It's been a long and tiring road - mostly emotionally - for Lon and me this month.
What could it be?

Gall Stones? Kidney Stones? Nope! Ultrasound on 12/31 said no to both.UTI? Nope! Urinalysis said no.Food Intolerances? Has a dairy intolerance. Possibly to Rice milk, too. We've done some major changes to his diet! Holy moley - it's craziness I tell ya. We are introducing some real foods - finally - blended and pushed in via syringe into his g-tube extension. Eli has had turkey, tuna with olive oil & celery, & grapefruit juice. Our goal is more real and blended foods!Bowel Obstruction? The x-ray from 12/30 didn't show it to be obstructed, but maybe backing up a bit causing a "poop loop" (my word, not the Docs) in his large intestine. Could be causing pressure on his diaphragm, which would hurt. We started with Miralax today...in hopes of getting him going more than once a day to keep things moving and see if it relieves that issue.Blood Work - We had his blood drawn on 12/30 also, to have it tested for food allergies again. It's been over a year and we wanted to see where he was at now....since we are moving forward with the blended diet - we need to know which foods tend to be best for him.
Here he is showing off his bandages, as the lady couldn't get it on her first and second pokes on his left arm! Then she calls Donnie over and he does it perfectly, the first poke in Eli's right arm. [Note to self: Always ask for Donnie first. He is awesome with children!]

Eli Jansen - The Star of the Blog!

My handsome little "Bug". Completely addicted to Despicable Me! Finally gave up listening to Elmo (hooray!) and now listens to his movie! Very opinionated about his music. (He comes by that honestly - my husband and I are both music lovers.) He's my: Bronco-riding, Chain-Loving, Pom-Pom shaking, Best-Shopping-Buddy-Ever, and makes me laugh every day!!

Amy - Wife, Mom, Blogger

8 years into this journey, and I'm amazed at the things that have happened in my life because of Eli. He is an inspiration to so many, and his smile can make anyone feel better, immediately. I never imagined that my son would be so awesome. I am blessed!